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Posts Tagged ‘colostomy’

The day we have been dreading arrived unexpectedly.  We recognized that mom was on the downside of that horrible dementia cycle, but it still caught us by surprise and took my breath away.

Dad called around 9:30 one Sunday evening. By the tone of his voice I knew immediately that something was very wrong. “Your mom went to bed as soon as we got home from your house.  I just went to check on her and she was sitting up on my side of the bed.  When I walked in she said, ‘My husband fell in the shower.  I tried to help him up, but I couldn’t.  Can you help him?'”

Dad, being the kind soul that he is, went into the bathroom and returned a short time later to let mom know that he had gotten her husband up. She had again pulled off her colostomy so he took her to get cleaned up. As dad was helping mom back to bed she again asked about her fallen husband, “Is my husband alright? Is he hurt?” Dad responded, “No, he’s fine. He’s not hurt.”

Dad’s voice cracked as he relayed what had just happened. His heart was breaking and so was mine.

Since that night no further instances of mom not recognizing someone close to her has occurred. For that I am thankful. But I am afraid that this was a mere glimpse of what is to come and it saddens me deeply.

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Dad was restless and unable to sleep so was up watching tv in the living room when the phone rang at two in the morning.  “Mr. L, this is Lifeline.  Your wife needs some assistance.  She said you were asleep in the other room with the twins.”  Twins??  What twins? As far as I know we don’t have any twins in our entire family.  

Dad rushed to the back of the house where he found mom.  Her colostomy had a “blow out” as dad calls it and mom was in the bathroom patiently awaiting dad’s help.  “Are the  twins still sleeping?” Mom asked.  Hesitating briefly dad responded, “Yes they are.”

Dad has grown so much on this journey through dementia with mom.  It certainly has not been easy for him.  It hasn’t been easy for any of us.  Acceptance has been the hardest part.  I think dad has finally accepted that there will be twins, there will be Martians on the roof and there will be dogs named Princess, even if they only exist in mom’s mind.  He has learned many things, but the most important thing he is learning is patience.  

And the most important lesson I am learning is that love and patience will get you through anything.

I love you mom and dad. You are my inspiration.
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“Your mom’s having a really bad day.  I could barely wake her up, she refuses to eat or take her medicine.  I told her to go get dressed and she came back with two pairs of pants and no blouse.  I had to dress her because she didn’t remember how to do it herself.” ………. “I hate to bother you, but I think I need to go to the hospital.  I keep getting really dizzy and I almost fell.  And I think my blood pressure machine is not working cause it won’t register.” ………. “I told your mom to go get ready for bed.  She asked me to go with her because she didn’t know what to do.” ………. “This is Lifeline.  Your mother has fallen and we can’t reach your father.” ………. “I’ve been having chest pains since yesterday and my arm hurts.  I think I need to go to the hospital.” ………. 1:00 a.m. – “This is Lifeline.  Your mother has fallen and your father cannot get her up.  He asked that you go over and help.” ……….  “Where are you?  Your mother is having severe stomach pains and wants to go to the emergency room.”– these are just a few of the phone calls I’ve received in the last couple of months.

I can’t say 2013 is off to a great start.  Dad has had two hospital stays, one for dehydration and one for chest pains.  The blood pressure machine wasn’t broken as he thought, his blood pressure was just too high for it to register.  He had an angioplasty and thankfully only one small blockage was found near the stent he already has.  It is being treated with medication.

Mom was hospitalized for several days with an obstruction in her colon.  During that stay she was given morphine.  She was unresponsive and completely out of it for days afterwards.  She has not been the same since.  Her good days are fewer and bad days more severe.  The middle of the night phone call from Lifeline about her fall resulted in a black eye, swollen cheek and half of her face a deep purple-black color radiating down her neck.

And I anticipate a trip to the hospital with Uncle C this evening.  If not tonight, soon.  He’s been once this year, but has already warned us that he thinks he may need to go tonight.  Of course, he always waits until the middle of the night.  I guess he wakes up struggling to breath and is frightened.  I would be too.  I’m just waiting for the middle of the night phone call that is sure to come.

Then there was the phone call from my dermatologist’s office at 5:40 one evening … “This is Dr. R’s office.  The spot removed from your back was a basal cell carcinoma.  We need to schedule an appointment to have it removed.”  My dermatologist had assured me that the bright red spot that seemed to have appeared overnight was nothing to worry about.  Not my luck!

Is it no wonder that I’ve come to dread the ringing of that damn phone?  I feel a sense of panic every time my father’s number appears.  I freeze.  I stop everything.  I answer it no matter where I am or what I’m doing.  Sometimes it’s as innocent as, “I just wanted to see if you won your tennis match.”  Yet still I my heart skips a beat and I can’t help that feeling of doom.  I keep telling myself, “This too shall pass”, but in actuality, probably not for quite a while.  So for now, I live in fear of  that ringing phone.

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After asking daily (repeatedly!) for dad to take her to the casinos in Biloxi, dad finally relented. “Did I tell you we were going to Biloxi?” Dad asked. “No. Mom did, but then she tells me that everyday,” I replied with a grin. Despite how much dad hates it, he was taking mom to Biloxi to satisfy her, at least temporarily.  Sadly, mom is happiest at the casino. She sits in the car on the way, happily tapping her foot to the music and singing along. It’s one of the rare times these days that she shows emotion.

The only positive thing about going to the casino is that they have to walk – a lot.  It’s the only exercise mom gets.  She refuses to do anything else.  While taking the long walk through the casino to get to one specific machine that mom loves, she needed to stop to use the restroom.  Mom went in as dad stood guard outside of the door.  When mom did not exit the restroom after several minutes, dad grew concerned.   He asked the next woman who came out to do him a huge favor.  “My wife has been in the restroom for a very long time.  Can you go in, call her name and ask if she needs help?” dad asked.  The young woman happily obliged.  She soon returned telling dad that my mother did indeed need help.  Her colostomy had fallen off and she needed a change of clothing.  “I’ll wait with your wife while you go get her clean clothes,” she offered.  Dad rushed up to the room, returning with the needed clothing.   He called the young woman’s name and she promptly met him at the door.  “Your wife said she needs another colostomy too,”  she informed dad.  Again, dad ran up to the room, returning with another colostomy.  She again met him at the door to retrieve the clean clothing and colostomy.  At that point dad asked her if she knew how to change a colostomy.

“Doesn’t your wife know how?” she asked.

Dad responded, “My wife has dementia.  She’s never done it.”

“We’ll figure it out,” was the response.

“It snaps on like a Tupperware,” dad informed her.  Armed with that little bit of instruction this wonderful young lady went back in to aid mom.

If you’ve never dealt with a colostomy, it can be a mess, especially if it has fallen off.  And it smells awful.  Mom, in a public restroom with feces on her and her clothing, smelling up the entire room, must have been terribly confused as to what to do.  This young woman with no experience in such matters, not knowing this elderly couple, went into the stall with my mother, washed her, snapped her fresh colostomy in place, helped her put on clean clothing, placed her soiled clothing in a plastic bag and walked mom out to meet dad.  Relieved and grateful, dad profusely thanked this young woman, placing $80.00 in her hand, all of the cash he had on him.

“Oh no,” she responded.  “I can’t accept that.”

“Please take it,” dad pleaded.  “You will never know how much I appreciate what you did for my wife today.  Take it, buy yourself something nice.”  She reluctantly accepted.  To this day dad’s big regret is that he did not get her name and address so he could send her a note again thanking her for her kindness.

Hearing dad tell this story brought tears to my eyes – and to his.  With all that is wrong with this world there is still much good.  There are still people willing to help others with no expectation of receiving anything in return.

Angels do walk among us.

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I took mom shopping for a dress for my son’s wedding. Despite what she’s been through, despite the dementia that is eating away at her brain and her memory, mom is still a very proud woman.

When I arrived to pick her up, dad asked me to help mom select a pair of  shoes from her closet for our shopping trip.   I suggested that she wear the practical diabetic shoes that the doctor wants her to wear.  “They’re ugly,” mom said crinkling up her nose.  I laughed and then chose a cute pair of sandals that I thought she’d be comfortable in.  She then refused dad’s suggestion that she bring her walker, because it makes her look old.

When we were ready to go I asked mom where she wanted to shop, suggesting several clothing stores nearby.  “Dillard’s,” mom replied, which of course is in the mall across town.  “Well since we are going to the mall and you will have to do a lot of walking maybe we should take the walker,” I suggested.  Surprisingly she agreed.  I loaded up mom and the walker and away we went.

On the way mom spotted a Smoothie King.  “Ooh, I want a smoothie,” mom exclaimed.  “Sounds good mom, we’ll get one after we shop,” knowing full well I’d get nothing out of her once she got her reward.  “I’d rather take a beating than do this,” mom remarked.  “Really, mom?  We used to have so much fun shopping together.  We’ll have fun,” I responded.

After some struggles I got mom and the walker out of the car and up to the second floor where the dresses are.  Luckily the walker has a bench seat on it so mom was able to rest as the walk left her winded.  I began looking for suitable dresses and bringing them to her.  Some she liked, but she did not hesitate to tell me when she didn’t like others.  The one thing I did notice was that mom didn’t seem to remember her age and size since most of the dresses she selected for herself were much too young-looking, too short and of a clingy fabric.  I handled that by saying, “Oh, that’s lovely mom.  Too bad they don’t have your size.”

When I came upon a smokey blue, tea-length dress with a short jacket mom got excited.  “I love that color!” she exclaimed.  We took several dresses into the dressing room and mom tried the smokey blue one on first.  It fit perfectly.  After discretely checking to be sure the ostomoy didn’t show through, I proclaimed the dress to be perfect, telling her that it made her eyes appear an even deeper shade of blue.  It was the only one of its kind on the floor and it was in mom’s size.  How lucky was that?  God was looking out for us.

We then headed off to the shoe department.  We decided that silver shoes would be perfect.  Knowing mom’s balance has not been good lately, I suggested several pairs of flats, but she insisted on a shoe with a heel.  A very kind salesperson assisted us, showing us a silver shoe with a very small wedge heel.  The shoe fit well, but mom insisted on trying a dressier pair with a pointed heal.  She could barely stand, legs wobbling around.  “I think the other pair would be better,” she said and I agreed.  We happily exited the mall with the lovely dress and shoes.  Mom was happy and so was I.

Before her bottom hit the seat of the car she was asking for that smoothie so away we went.  Mom suggested that we get one for dad also to surprise him so we got one for each of us. 

“We better get back, mom, I bet dad is getting worried about us,” I said.

“No, he’s just happy he doesn’t have to take care of me right now.  You had to take care of me,” was her response.

“I wasn’t taking care of you mom.  We were just two women out shopping together, like old times.  Next time we’ll do lunch too,” I said.    Mom smiled, happily slurping her smoothie all the way home.

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A couple of days ago I got the call from dad, whispering like only men whisper.  You know what I mean – that deep, low, kind of creepy sounding voice that only men have because they really don’t understand quite how to whisper.  It’s always the same, dad calling, whispering so mom doesn’t hear him, even though in all probability mom is either sleeping or nowhere near.  Dad calling to tell me that mom was having a bad day.  I wasn’t surprised by the call.  Actually, I was expecting it.  I knew it was coming.  I had noticed that for the last few days mom wasn’t really with us.  Those eyes were back – the dementia eyes.  They weren’t the glaring at me kind of dementia eyes, but they definitely were there, just kind of peeking at me, teasing me, just letting me know that they were still hanging around.  “Your mom’s having a bad day.  When she woke up I was outside working in the yard.  Her bag was full and she pulled it off.  She just went back and laid down on the bed, just went back to sleep.  It was a mess.  She didn’t even know.”  “I’m so sorry dad,” I responded.  The ostomy complicates an already difficult situation.  When she gets really confused she pulls it off.

Mom has been doing extremely well and I have been so pleased.  The last two weekends my parents went camping with their camping club and both really seemed to enjoy it. Dad needs the interaction with others desperately and mom enjoyed it as much as I think she is capable.   But when I visited them on their return I noticed the confusion.  Maybe the camping tires her.  Maybe she has to work so hard to pretend everything is okay that when she returns home she just can’t pretend anymore.  Whatever the cause, the dementia reared its ugly head again.

Later that day I asked dad if he was still giving mom the coconut oil.  He confirmed my suspicions – she hadn’t been on it for a couple of weeks.  He just can’t get it down her any longer.  He used to sneak it on a sandwich, slathering mustard over the coconut oil to cover the very distinct coconut flavor.  He tried putting it on biscuits, covering it with jelly.  He has tried cooking with it, but they both hate everything tasting like coconut.  Mom now refuses to eat any type of bread – no sandwiches, no biscuits, no waffles, etc., – just to avoid that dreaded coconut flavor.

I believe there is a noticeable difference in mom when she is not taking the coconut oil.  Initially I thought perhaps it was just a coincidence that the dementia seemed to worsen when she wasn’t taking it.  But now, I really think there is a direct correlation.

The same day I found out mom was no longer taking the coconut oil an old friend happened to call.  She had just discovered the benefits of coconut oil and was quite excited about it.  From this conversation I learned that there is now a flavorless coconut oil.  After doing a little research I found that the flavorless coconut oil does indeed exist, but it has been “refined” and has a “neutral” flavor.  I would think that the “unrefined” coconut oil is probably better than the “refined”, but try as I may I cannot find information comparing the health benefits of the two.  Nonetheless, I guess any coconut oil is better than no coconut oil so I’m off to the market in search of the “neutral” flavor oil.  I am a believer and I’m not giving up yet.

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Well, we made it to Orange Beach – by the hardest.  Uncle C was released from the hospital on Monday and was doing fairly well.  My husband and I were scheduled to leave on Wednesday and the rest of the family were to follow on Thursday and Friday.  We needed a day to ourselves since we have very little alone time these days.  The trip has been scheduled for months and everyone was very excited about going.  It has been years since we took a family vacation.  Our three grown children, their significant others, our granddaughter and my parents were all planning to be there.  Uncle C declined, at first saying that he didn’t want to impose on our vacation, but when it came down to it, he just wasn’t up to the trip.  Although mom was looking forward to going, we were quite concerned that she would get all the way to Orange Beach, five hours from home, stay for her usual 20 minutes and be ready to go home.  She was worried too.  In fact, at one point she asked dad, “What did I get myself into?”

Of course, there were issues the morning we were to leave.  Uncle C was up 3 pounds in 2 days – not a good thing for a 93-year-old man with congenital heart failure.  What that means is that he was again retaining fluid.   His doctor’s nurse assured us that he just needed to stay on the “cardiac diet”, i.e. no salt, so my husband and I took off for Orange Beach, leaving him during the day in the hands of his usual sitter, “Christine”.  Now, Christine is not her actual name, but that’s what Uncle C has been calling her for the last seven months.  Since we didn’t feel that it was wise to leave him alone at night, we hired a new sitter to sleep over.  She was recommended by an acquaintance and turned out to be a very sweet older woman.

We arrived at our destination around 3:00 p.m. and soon entered the lovely condo that was to be our home for the next five days.  It was a four bedroom, four and a half bath “penthouse” on the 13th floor.  The view was stunning.  Our balcony overlooked the bay, the three outdoor pools and outdoor jacuzzi, boat docks and Ono Island which harbored beautiful homes that one could only dream of owning.    Although we truly enjoyed our alone time together, my husband and I were looking forward to the arrival of the rest of the gang.

The first to arrive was my mother and father.  Their trip was rather uneventful except for their stop at the Mississippi State line rest area.  Mom went in the women’s restroom and dad in the men’s.  When mom didn’t come out dad panicked.  He saw a woman who worked at the rest area and asked her to check on mom.  This kind woman agreed and soon returned saying that mom needed help.  The state employee waited with dad for two women to exit the restroom, put a sign indicating that the restroom was temporarily closed and allowed dad to enter.  She stood guard.  Mom was in a stall and could not remember how to get out.  Dad coaxed her into sliding the knob over and out she came.  The other issue was a little more challenging.  Her ostomy needed to be attended to so right there in the Mississippi State line restroom, dad changed her ostomy and they were soon back on the road.  Thank you Lord for kind, caring people.   With about an hour left in their journey mom began to get anxious, but once there a miracle happened.  Mom relaxed.  I mean truly, completely relaxed.  No anxiety, no “I’m ready to go now”.  They walked into the condo and were in awe.  Mom immediately went out to the balcony and became entranced in the beauty.  After sitting on the balcony with my husband and me for about an hour saying very few words, mom uttered the statement of the weekend – “I wonder what the poor people are doing.”  My husband and I almost fell out of our chairs laughing and mom chuckled along with us.  It became the catch phrase of our trip.

The weekend went great and mom was a real trooper.  She insisted on coming out to the beach with us every day even though walking in the sand was quite the challenge.  She sat with me under the canopy we brought, attentively watching the kids and our granddaughter frolic in the surf, create sand sculptors and gather shells.  Gone were the morning naps and the afternoon nap was much briefer than usual.  I think she just didn’t want to miss a thing.  No, she isn’t the same woman who a little over a year ago would have been strutting around on the beach with matching everythings, but she was definitely with us and in the moment.  It was a clear-eyed weekend.  She spent the evenings on the balcony, looking out on the bay watching the boats and dolphins as we barbecued and relaxed.  We all ate meals together, played games and enjoyed each other’s company.

The only issue we had was with our cell phones.  On Wednesday morning, before we even left home my cell phone went crazy.  It refused to ring, but would answer itself which was quite dangerous since the caller could hear any conversation I might be having.  It would also scroll through my address book, incessantly ting, ting, tinging as it did so.  Even making a call was a challenge since I had to quickly push the call button as it scrolled through the numbers of my address book, hoping that I hit it just right.  And my husband kept taking his for a swim.  Our first day on the beach, he eagerly jumped into the surf with our granddaughter forgetting his phone was in his pocket.  The phone did not swim well.  Off we went to Wal-Mart to purchase a Go-Phone to replace the one he drowned.  Next time on the beach he drowned another phone and back we went to Wal-Mart to buy his second Go-Phone of the trip.  He had informed the sitters that his phone was ruined and to call mine.  Bad move!

Of course, as fate might have it Uncle C got sick while the new sitter was with him.  He began running 102 degree fever and feeling awful.  Being unsure of what to do, she repeatedly called “Christine” for advice before finally going over to get my neighbor for help.  My neighbor attempted to call my phone which, of course, would not ring but would answer itself at which time they could hear the whooping, hollering and laughter of our game playing.  When I awoke on Sunday morning I had five missed calls from my neighbor beginning at 11:30 p.m.  I immediately knew something was terribly wrong.  A call home confirmed that Uncle C was ill and we instructed “Christine” to call for an ambulance.  My husband headed home a day early.  It turned out that Uncle C had bronchitis and was sent home with only a prescription.  Although it did not ruin our trip, it did put a damper on it.

Everyone made it home safely with lots of great memories and hopes for future trips.  And now everyday when I make my daily visit to my parents’ home, the first thing out of mom’s mouth is, “I want to go back to Orange Beach!”  Oh, how I wish we could, mom.  And I pray that one day we can do it again.

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